By: Jessie Carr
In my 18 years of battling various chronic illnesses, with all the terrible symptoms and the terrible doctors and the even more terrible social and emotional challenges of being a “sick” person, nothing has been so debilitating as my ongoing war with vulvodynia.
In the early days of my diagnosis, when I turned to the Internet for information and a glimmer of hope (as I am sure you, Dear Reader, are also doing), a sentence like that would have moved me to yet another round of tears. But I will not mince words.
I owe that to my fellow sufferers who live in a world where the utterance of the word “vagina” is often met with snickers or blushing or
disgust, when of course the vagina is just another body part—an important one at that—and sometimes it gets sick, too.
I make this ominous proclamation to underline the gravity of this condition and to validate your suffering.
But I will follow it up with an equally important proclamation: this condition is manageable, and you will be able to enjoy your life again one day. I won’t lie: it may not be easy. But it will happen.
So, altogether now, let’s do this.
Vulvodynia is chronic vulvar pain without an identifiable cause. The pain may be constant or intermittent, provoked or spontaneous, localized to the vestibule (the area surrounding the opening to the vagina) or spread throughout the vulva and pelvic region, and can be described as burning or stabbing or throbbing or any of those other hopelessly inadequate adjectives we use to describe pain.
Basically, the specific symptoms of vulvodynia are as diverse and varied as the women who have the condition. Vulvodynia affects an estimated 16% of women and doesn’t discriminate based on age or race, meaning approximately one in every six women you meet experiences vulvar pain. However, researchers believe the estimated rate is underreported because many women do not seek help due to embarrassment and those who do are often misdiagnosed.
You are not alone, even if no one seems to be talking about it.
To diagnose vulvodynia, your medical provider must first rule out everything else, such as infections, skin disorders, hormone imbalances, etc. Once all the “identifiable causes” have been ruled out or treated, any pain that remains is classified as vulvodynia.
Now, I don’t know about you, but that phrase, “without an identifiable cause,” makes me bristle, because it sounds too much like the “you’re-making-it-up” and the “it’s-all-in-your-head” nonsense I’ve heard so many times over the years in relation to all my other illnesses. (Apparently, I’m very creative.) Unfortunately, women with vulvodynia have almost universally been told this at some point during the long months and years spent searching for a diagnosis.
“Most women with vulvodynia seek treatment from multiple health care providers before they are given the correct diagnosis,” says Dr. Melissa Dahir, DNP at Omaha OB-GYN Associates, PC (and the woman who saved my life). As the Midwest’s leading expert in sexual medicine and vulvar pain disorders, Melissa practically wrote the book on vulvodynia (as she likes to say with a wink—check out the first citation on Wikipedia’s vulvodynia
“Thanks to the Internet, many women are self-diagnosing, but they may not receive appropriate treatment,” she continues. “Why? Because most health care providers are not competent to treat vulvodynia due to inadequate training.”
Also, like its annoying chronic pain cousins (e.g., fibromyalgia, migraine, IBS, etc.), vulvodynia does not have a handy-dandy diagnostic lab test to prove it exists.
Luckily, research has identified many potential causes for vulvodynia. This includes an abnormal response to recurrent vaginal infections or an allergic reaction (neuroproliferation) in which there is an excessive growth of nerve endings around the vestibule. A hormonal imbalance due to birth control pills is another possible cause. Low dose contraceptives alter the vaginal mucosa and lower the threshold for pain. As a result, the vaginal tissues are more vulnerable to mechanical strain (e.g., penetration during intercourse or a vaginal exam), thereby causing pain. Next, vulvodynia can occur due to tight pelvic muscles, also known as hypertonic pelvic floor dysfunction. In this case, there is decreased blood flow to the pelvic floor and the lack of oxygen causes a build-up of lactic acid. And finally, genetic susceptibility may be to blame, or the condition may arise out of the blue.
Luckily, help is out there.
“Currently there are no FDA-approved treatments for vulvodynia and that is likely the reason for poor management,” Melissa says. “However, vulvodynia is not difficult to treat [emphasis mine] if your healthcare provider has specialized training and they use research to guide patient treatment. This is also known as evidence-based medicine and it is crucial in the treatment of vulvodynia because current research offers the best possible outcomes for patients.”
While there may be no single, straightforward “cure,” there are seemingly countless treatments to try and a different combination will work for each individual woman. Oral pain medication, topical creams, physical therapy, diet and hygiene modifications, even surgery, complementary medicine, and more may all be considered. Lengthy rounds of experimentation are the last thing you want to do after what may have already been years of suffering, but some combination will eventually alleviate your pain.
At my first visit, Melissa made me promise I wouldn’t give up until she did.
By that time, I’d been suffering for more than a year and had consulted my fair share of health care providers already. But she knew she’d made a safe bet because the possibilities for treatments are endless. It took six months of experimentation to refine my personal “cocktail,” which eventually included
injections, pills, creams, ointments, special body wash, and a whole lot of loose-fitting pants. The final key to my success? Melissa and I invented a compounded cream of three medications that was so effective, she’s started prescribing it for other patients.
I’ve been able to taper off of most of those medications, but I still have a daily maintenance routine and occasionally have flare-ups. But now that I know how to manage my symptoms, I feel like life is OK again.
For me, being in control of vulvodynia was more important than curing it.
Pain is bad. Chronic pain is worse. Chronic pain in a part of your body that you aren’t supposed to talk about in polite conversation is the worst of all.
Despite the recommendations of my doctors, I refused to see a therapist during my treatment. Now, I’m not one of those people stymied by the stigma against mental illness. I have bipolar disorder and enjoy making people uncomfortable by talking about it openly. But I was convinced that my depression would evaporate once I was cured, so there was no point in learning how to “deal” with my symptoms.
My depression did, in fact, improve once my symptoms became manageable. But mentally, I was still a wreck. I still am. More than any of my other conditions, vulvodynia fundamentally changed me.
“Vulvodynia takes a greater toll on women when it is not diagnosed or treated appropriately because it affects quality of life and interpersonal relationships,” Melissa says. “It is not uncommon for a woman to feel frustrated when their trusted gynecologist dismisses their complaint, or if they are told ‘have a glass of wine and relax’ or ‘use more lubricant.’ This can be detrimental to a sexual relationship because the partner may not believe the pain is real. Without a diagnosis, the partner is led to believe the pain is an excuse to avoid intimacy. The vicious cycle can create relationship conflict and cause the woman to feel hopeless, depressed, or suicidal.”
Personally, it was the feeling that I couldn’t talk about my misery to anyone that made the experience so traumatic.
I am lucky to have a supportive husband who is not only experienced in the whole “spouse of a chronically ill person” thing, but has become so passionate about the patient experience that he has pursued it as a career. That doesn’t mean I don’t feel guilty or miss the relatively carefree intimacy we used to share.
Melissa encourages partners “to be active in the medical treatment because this is a couple’s disease. It is helpful when the vulvodynia partner attends the first visit because it is a great opportunity for education. I encourage the partner to watch the vaginal exam with the patient’s permission. This is especially helpful when the source of discomfort is isolated because it validates the pain is real.”
My husband is wonderful about believing my pain is real. In fact, he often has to convince me that I’m not making it up, because all these years of chronic pain and dismissive doctors have made me doubt my very sanity. Still, it has always been helpful to have him along for my visits. His holding my hand while I received vestibular injections was certainly a bonding experience, although not one I would recommend.
Your partner is likely the person with whom you are most comfortable discussing your private parts, but finding more support is always a good idea. Personally, it was the feeling that I couldn’t talk about my misery to anyone that made the experience so traumatic. There I was, so sick that I was suicidal, and I felt like I had to pretend everything was fine.
Melissa recommends that women join a self-help group through social media.
“Many women find comfort knowing they are not alone,” Melissa says. “It also gives them an opportunity to express their feelings and discuss their response to treatment, which often helps other women suffering from chronic vaginal pain. I often tell my patients, ‘you are not crazy, but not treating vulvodynia will make you crazy.’”
When I finally did break my silence and tell the women in my life about my ordeal, no one rejected me. No one was disgusted or embarrassed. Actually, I was shocked to find that everyone had some sort of vulvovaginal horror story of her own. In one of life’s bittersweet twists of fate, my story helped my niece finally get diagnosed and treated for her own case of vulvodynia after three years of suffering.
In the years since I started having symptoms of vulvodynia, not only have I learned to manage my symptoms well enough that I enjoy my life again, but I have actually created more life to enjoy. My baby will have her first birthday in just a few weeks. I’m not cured—this is a chronic illness, after all—but there is no greater endorsement of my message of hope than the fact that I successfully procreated despite my vulvodynia.
Oh, you want more proof? My niece—you know, the one with vulvodynia, too? In a few months, her baby will also turn one.
A Final Note from Melissa:
“Unfortunately, most women have to self-educate and advocate. The key is to seek knowledge from the experts. I suggest joining the National Vulvodynia Association to find a qualified healthcare provider near you. Additional professional resources include the International Society for the Study of Women’s Sexual Health and the International Society for the Study of Vulvovaginal Disease. And finally, it is helpful to include sex therapy when additional support is needed. A certified sex therapist can be found at AASECT.”
You can learn more about Dr. Melissa Dahir, DNP, at her website: melissadahir.com.
About the Author:
Jessie Carr is a self-described “sick-at-home-mom,” freelance writer, and graduate student studying Creative Nonfiction at the University of Nebraska Omaha. She lives in Omaha with her husband and two children. You can read more of her humorous stories about life with chronic illness at her blog Life, Not Otherwise
Feldhaus-Dahir, M (2011). The causes and prevalence of vestibulodynia: A vulvar pain disorder. Urologic Nursing 31 (1): 51–4.
Goldstein, A. T., et al. (2014). Polymorphisms of the androgen receptor gene and hormonal contraceptive induced provoked vestibulodynia. The Journal of Sexual Medicine, 11(11), 2764-2771.
Gordon, A. S., Panahian-Jand, M., McComb, F., Melegari, C., and Sharp, S. (2003). Characteristics of women with vulvar pain disorders: responses to a Web-based survey. Journal of Sex & Marital Therapy, 29 (sup1), 45-58.
Stockdale, C. K. and Lawson, H. W. (2014). 2013 Vulvodynia Guideline update. Journal of Lower Genital Tract Disease 18 (2): 93–100.